immunotherapy

[Le-gra143]

hi there

Very low. My midway scans are showing my lymph nodes that grew after my huge debulking surgery in March have not shrunk with the chemotherapy and I have some nodules on peritoneum ( nothing in any organs)

So he can’t say that the chemo hasn’t worked in other type cancer but it’s not doing anything to these ones so they won’t do anymore surgery or radiation. He then suggested getting me on a trial

I feel numb and feel a desperation now

Has anyone been on one, has it helped

Feeling so down

[Le-gra143]

Hi Bobby Lyn

So so down today and my family

They won’t do radiotherapy or any more surgery as lymph nodes not shrunk

So all I have is this trial to try if I’m successful

I feel like I’m at a standstill and I’m just waiting for cancer to keep growing and go everywhere

I cryed so much last night I’m exhausted and my husband and myself just feel in limbo

How are you feeling

I swear I don’t feel sick

Even before I found the mass in a private test I did

[Le-gra143]

it’s a comfort talking to u

Sometimes even being surrounded by so many I feel very much alone. It’s awful feeling

I feel a bit better now

I’ve let out a lot of emotion today

So thank you for your words and guidance

I’m going to the beach tommorow and put my feet in the water

[Riverflo]

Hi there,Sorry, it is a tough crossroads to reach. I am nearly at that point, now platinum resistant and on the last chemo option available.

Which trial has been suggested for you?

Martine x

[Le-gra143 in reply to Riverflo]

Hi martine

He didn’t say any names to us. I will have to wait 2 weeks till I see hime again

Have u done many chemo options

Wishing you well

[Riverflo in reply to Le-gra143]

Hi Le-gra,Okay, hopefully he will give you the trial name next time so you can look it up.

I had three different chemos, Niraparib, and a trial. The trial didn't help me but they do help other people so I would try one agsin in future.

I'm currently on weekly Taxol which seems to be the option when you become platinum resistant. Its not bad really, I still have a reasonable quality of life.

Anyway, all the best to you, while there are still options there is still hope.

Let us know how you get on.

Martine xx

[Motiva]

You are understandably upset and crying is a good to let out your fear and sadness. I hate upsetting everyone else too especially my husband but they all say repeatedly that it is because they care and love me and want to share the pain.

A trial would be a good place to go. If your hospital can’t link you up have a look at cancerresearchuk.org/about-...

I have found it helpful to add some new foods to my diet as recommended by Dr William Li in his book ‘Eat to Beat Disease’ drwilliamli.com/

I have a love/hate relationship with green tea but honey makes it more palatable.

Best wishes and sending you comforting thoughts,

F x

[Le-gra143 in reply to Motiva]

Hi motiva

Yeah I know they do care I just feel responsible when they upset and can’t sleep

I go to counselling and it helps dealing with the worst in my head

Thank u for the links I actually was looking up a different diet so I’ll look at those u sent me

I appreciate your time

Wishing u well x

[Tulips66]

Hi Le-gra, just wondering what chemo you were on? Has your oncologist not suggested trying a different type of chemo, as its possible that you might respond better to it. I have been on Carbo/Taxol & Avastin together in 2019 & then continued on the Avastin as maintenance until Sept 2020 when I recurred. I had more surgery & more chemo, this time Gemcitabine/ Carbo & then continued on the Gemcitabine on its own as maintenance till Nov 2022 because I couldn't stay on it any longer, but it shrunk all the remaining nodes in my abdomen so a great response. I am currently on a parp inhibitor & waiting for the results of a recent Ct scan to see if the nodes have stayed the same. I know the difference is I responded initially to the first chemo for a short while & they are saying you didnt but its worth asking about trying a different chemo. If you are not happy with the lack of will to try something else, as one of the other ladies said look for a second opinion. I hope you find other options before you try a trial. Let us know how you are getting on & you know we are all here to help & support each other through the difficult times so just shout anytime you are feeling down. I hope the sun is shining today where ever you are in Ireland today. Its gorgeous here today so everything always feels better when the sun shines. Take care & best of luck Xx

[Le-gra143 in reply to Tulips66]

Hi tulip

Thank u for your reply I’m on the same chemotherapy and my 5th one is tommorow. He didn’t say any other chemo combinations and they won’t do radiation or any surgery because the nodes need to shrink

He thinks this immunotherapy will help me

He said these nodes aren’t effected by the chemo as they have protein attached to them which send out signals that they are good and not to attack them and the immunotherapy targets them kills the protein and my own immunity kills them

I don’t know what happens next he said he will have lab results by Friday and he has loads of forms to do

He will call me back to him in 3 weeks. I hate them waiting it’s so hard. I’m trying to keep busy but it’s tough my mind just goes to the worst place.

What is a park inibitor. All the best for scan results

Thank u for taking the time to answer me appreciate

Even if it was raining here we be still out lol

[mizpurple in reply to Le-gra143]

Hi Le-Gra - I was fortunate enough to receive the kind of immunotherapy your doc is describing, after three lines of chemo still left me with active remnants. It does work in a different way than chemo or radiation, and IF your cancer tissue can be targeted by it (mine was), it can really be effective. That's why your doc is pursuing the tests and paperwork to try to access it for your situation. So as others have said, try to hang in there, live your life to the best degree you can, and if immunotherapy is offered it will be because there is a real possibility it will help. I'm still standing 4 years later. All the best to you! Deb in Colorado

[Le-gra143 in reply to mizpurple]

I woke to your reply and the comfort it has given me is so appreciated

Thank you

I’m praying I get it

Or I will try to go to the uk.is it very expensive

[mizpurple in reply to Le-gra143]

It is indeed expensive. My insurance covered it (I am very fortunate in this regard as I am still employed and have insurance through my employer). I hope you get offered this option.

[Le-gra143 in reply to mizpurple]

Thank you so much you don’t understand how your replies have soothed me I am in a better place

Thank u x

[delia2]

Hi. PARP inhibitors are maintenance drugs that work best on people with BRCA mutations but there is a test to see if you are homologous recombination deficient (HRD) which would also qualify for a PARP. They are pills you take after chemo is finished. In my case my second course of chemo was only partially successful but I went on Olaparib after and it got rid of the remaining tumors. I’ve been ned for three years now. PLEASE seek another opinion from a major cancer hospital even if you have to pay yourself. You might be able to do a telehealth consult with a US cancer center like MD Anderson or Dana Farber or Memorial Sloan Kettering.

[Tlflom in reply to delia2]

I was trained at MD Anderson, and they are very proactive. BUT, they do not have a CyberKnife. They strictly have Varian brand of external beam radiation. I do not know if Sloan Kettering has one. SBRT is good and all brands of machines can to it but not to the degree of accuracy.

[Le-gra143 in reply to delia2]

Thank u so much delia2

I will take everything u said and research I appreciate your time to reply to me

Best wishes

[Tlflom]

There is a proceedure called sbrt with cyberKnife. No it is not painful just an unfortunate name. It is a very accurate (sub-millimeter) and great for mets like lymph nodes and other spots. When used at the same time as immunotherapy, it does a great job of triggering the immune system to go after none treated tumors. Every brand of radiation therapy machine claimes to do what cyberknife can do. Technically, yes. In reality, no because it would take too long for the clinics bottom line and most therapists do not want to enter the treatment room every few beams to change the position of the table. I have worked on every brand of external radiation machine. There is no substitute for CyberKnife. I have worked every model of CK from 8.5 to S7 (long time). I retired 5 yrs ago but still go in to my home clinic when needed, plus do contract work around the country.

[PPSCENE]

hello. Lots of love. Stay positive. My mum had a recurrence of endometrial cancer a few years ago. She was offered a trial immunotherapy drug called Atezolizumab. It worked well and touch wood mum is doing well. Can you ask your doc about this drug? Xx

[Le-gra143 in reply to PPSCENE]

Oh thank u for replying placement

I live in Galway immunotherapy is relatively so new

So I am really hoping I get it my doc seems very confident that I’m a ideal candidate for iso fingers crossed

I’m so glad your mum is well I took the name of drug down

It might be in uk

Thank u